Offered by: Nemours Children's
Location: Delaware Valley
Experiences and Decision-Making for CFTR Modulators: A Qualitative Analysis
What is the trial about?
To explore the experience of patients and families in the CF Community related to highly effective CFTR modulator therapy (HEMT). These medications include: Ivacaftor (Kalydeco®), Tezacaftor/Ivacaftor (Symdeko®), and Elexacaftor/Tezacaftor/Ivacaftor (Trikafta®).
Who can participate?
Children/adolescents with CF (ages 12-17); Adults with CF (18 and older); and Caregivers (e.g., parents or guardians) of individuals with CF.
What is involved?
If you provide consent for your participation, we will ask you to participate in a 30-60 minute phone or telehealth interview about your feelings and experiences around highly effective CFTR modulator therapy (HEMT). HEMT therapy includes the medications: Ivacaftor (Kalydeco®), Tezacaftor/ivacaftor (Symdeko®), and Elexacaftor/Tezacaftor/Ivacaftor (Trikafta®). We are interested in hearing about your experience and perspective whether or not you take these medications.
We will also ask you to complete a background questionnaire, which includes personal questions related to you and your family.